CMTC-OVM
Netherlands, Silvolde
CMTC-OVM is a worldwide non-profit patient organization (since 1997) that aims to improve the quality of life of people suffering from vascular abnormalities (blood vessel abnormalities), such as CMTC, their families, and stimulate scientific research into these disorders.
Main Services:
Personal support, Information, Advocacy, Bringing patients, their families and healthcare providers together, Patient Advocate training, Family Days, Members conferences
The reason for the existence of the CMTC-OVM (Cutis Marmorata Telangiectatica Congenita and Other Vascular Malformations) association can be traced back to the birth of the daughter of Lex van der Heijden. She was born ‘black and blue. Since none of the midwives in the hospital had ever seen this before, a pediatrician was consulted. He was also unfamiliar with the condition and conjectured that this was a ‘cosmetic’ problem that would disappear over time.
Markings
“After a few months however, we noticed differences in the circumference of both legs,” says Van der Heijden. One of the legs had stains and the other had not. The leg with the marks was thinner than the normal one. After many examinations, visits to three university hospitals, and a ‘mere’ six months after her birth, the diagnosis was confirmed: CMTC. At that time hardly anything was known about this condition.
Start of the organisation
Van der Heijden: “Eventually we turned to the Dutch Patients/Consumers Federation (NP/CF) who advised us to register as contact persons in the Netherlands. We were put in contact (through the NP/CF) with the Skin Federation, an umbrella organization for patient organisations in the Netherlands involved with skin disorders. The Skin Federation advised us at that time to establish an organization for people with CMTC, and they were a great help to us in that regard. Van der Heijden became president of the organisation.
Objectives CMTC-OVM organisation
The association was formally founded on January 22, 1997 with the main goals:
To promote the welfare of people who suffer from vascular malformations such CMTC (Van Lohuizen syndrome), particularly its own members.
To promote (scientific) research into vascular malformations such as CMTC, the causes and the treatment thereof, and all that is in the broadest sense pertinent to such activities.
We have international advisor and ambassador teams (such as Prof. Dr. Jan Peter Balkenende).